Archive for August 2010

The photo above was the sight that greeted me when I went to get Pudding from the basement to tell her that her dinner was ready. She had been left alone for 25 minutes, while I prepared dinner. Not content with getting out every toy she and her brother own, she had also put on a DVD by herself (kudos on that one, she isn’t 4 until December), got into the closet and pulled out all the craft supplies. The ones that are up high and unreachable. Hmm. She knows I get angry when she makes a mess, so she hastened to clean up. The liquid you can see on the floor is a fusion of glue, and water that she had attempted to clean with. It is smeared onto her dress, the walls, the table, the light switch, pretty much any place her too-tall body could get to. The paper towels she had also used in her “clean-up” had turned the floor into a giant puddle of paper-mache. Spectacular.

This isn’t the worst thing she has done, but it is the most recent. Last week there was a very similar situation with paint (washable, thank goodness). I’d love to use some positive reinforcement to fix this problem, but when she isn’t rewarded immediately, it doesn’t seem to work. She is all about the instant gratification. This only happens when I’m busy elsewhere, so we looked to punishment instead. The “naughty chair” didn’t work with the paints, so Spectrummy Daddy and I discussed taking it up a notch. For the rest of the week, there will be no dresses, no nightgowns, and no mummy putting her to bed. Given that this resulted in bedtime taking 90 minutes longer than usual, it may be a long week.

So, as she was the orchestrator of the mayhem, why did Pudding ask me what had happened? The answer will be in my next post about echolalia, which will go up some time after I’ve finished tidying up down there. Until then, because I need to know we aren’t the only parents this happens to, please leave a comment with even worse escapades- either your own or those of your children. Tell me: uh-oh, what happened…?

I’ve been writing recently about little bits of progress here and there that Pudding has been making. I’m not entirely sure why this is happening, just natural development, or because of different therapies and accommodations we’re trying. For instance, with Pudding’s allergies, she is by default eating a gluten-free, casein-free diet, which may (or may not) be helpful for those with autism spectrum disorders. We finally found speech and occupational therapists who accept our health insurance, so she is back to having regular sessions. She just completed her third round of a home-based program to help with her auditory processing. Finally, she has been out of school, and spending more time playing with her brother and I.

At the same time, though, we have seen some regression in certain areas. Relative to her diagnosis, Pudding has generally been quite flexible, but that has changed recently. We even abandoned visual schedules (helpful for most ASD children) because she just didn’t seem to require a set routine, and was okay about not knowing what was coming next. It seems though, without intending too, we’d established a couple of routines. And once those routines were established, Pudding didn’t want to let go of them. At the mall, we’d go window-shopping, visit the play area, then go get something to eat. On Friday night when we we headed straight to the restaurant instead, we ended up dining with a very miserable Pudding. We went to the play area afterwards, and equilibrium was restored, but getting through the meal was much tougher than usual.

Also this weekend when she rode the carousel at her favourite playground, she didn’t get to ride the horse she specifically wanted, and sobbed the whole way round.

Somehow, she has determined that I’m the only person allowed to put her to bed, and mandates every night that Daddy will put Cubby to bed so that this remains the case. She also has to wear a princess nightgown, and a full-blown meltdown will ensue if she can’t find one. We go along with it, because bedtimes are a battle, and we’re weary of the fight. The happier she is upon getting into bed, the sooner she’ll go to sleep.

None of these instances are especially bad. In fact, some of you are probably reading this and wondering what I’m making a fuss about, that we have it so easy by comparison. We do, of course. Yet once we had a little girl who just would get excited about things happening in the moment. I miss that. She loved flying, so she was excited to go on a plane. She loved children, so she was happy to be around them. Increasingly I’m seeing more conditions being set, and order established to how events should occur. She is losing her flexibility. This scares me, not only because social interactions demand a certain amount of give and take, but also because we will be moving next year. Moving to a different country is going to require that she bends a great deal without breaking. We have to move, but now I’m concerned that she isn’t going to be resilient enough.

Developmentally, a lot can happen in a year. I know that two years ago I’d never have believed you if you’d said she had autism, or that she would be rigid or inflexible. There never seemed a child better suited to the Foreign Service lifestyle than Pudding, who loved the excitement of new places. Now I’m less certain. I don’t yet know where we’ll be living this time next year, but we might have a way to go before we get there.

I’ve been reading lots of articles and posts lately about labels, and the conflict that can arise from using the wrong one. For instance: does a person have autism, or are they autistic, as the author of this blog prefers? As a former carer and current spectrummy mummy, I’ve always preferred to use the ‘person-first’ approach, but in the case of autism, or even Autism, if you prefer, it doesn’t personally bother me. It is certainly an interesting debate, and sometimes the words themselves are less important than the intent behind those using them, and the reaction of those receiving them. I’ve even written posts myself about my reactions to certain phrases, such as “short bus” or “good enough mother“, where my interpretation of the words doesn’t follow the usual pattern. So words can be extremely powerful, but so can other kinds of communication.

Non-verbal communication is a challenge for people with autism spectrum disorders. When you consider how much we communicate through our bodies, our clothes, our posture, our gestures, and (sigh!) eye gaze, it is a wonder we need to use words at all. We do, of course, or I wouldn’t waste my breath encouraging my kids to ‘use their words’ at their every frustration.

At the advice of Pudding’s speech therapist, I recently bought a DVD teaching young kids about sign language to use with Cubby. Every word they use he already knows, but he is nonetheless enthralled, and attempts the signs, and also has started gesturing along with songs such as ‘wheels on the bus’ that use finger plays or actions. And because her school is out for summer, Pudding has been involved too. Something pretty amazing is happening- she is paying attention. Not just to the DVD, or music, but paying attention to what I’m doing with my body and trying to figure out what it means. I’ve indulged in times with her when I’m completely silent, and she has to figure out my meaning without words.* Instead of getting angry, which I was certain would be the case, she enjoys it. And there’s more. Her language has had a little boost. Her eye gaze has improved. But more importantly, her interactions have increased too, not just with me, but Daddy, her therapists, and most significantly of all: her brother.

I’m almost afraid to write of progress. Pudding’s development is like climbing a pole, such hard work to move up, and so easy to slide back down again. Also, I broke the sage advice of Dr. P of only trying one new therapy or intervention at a time, so I can’t say for sure what is causing this progress. But, hey, this is progress. I’m allowed to have a little celebration when it happens.

I went to the coffee shop with the kids yesterday. I was positively reinforcing (not bribing, who said that?) the kids with juice boxes and snacks. The kids were well behaved. And by that, I mean that they were contained to one area, not playing with the door, not running into people, not pouring drinks, and smearing sugar and milk, and the myriad of other things they would do if left to their own devices. They were still pretty loud and fidgety though. The lady sitting close by trying to read her book gave a frown our way, indicating non-verbally, that we were disturbing her. But Pudding communicated by flapping her hands that she was happy, and Cubby by dancing (to his own music), so I didn’t feel the need to move on. And then, one of those rare instances of a genuine smile from another customer. She was telling me it was okay, my kids were okay. No words were necessary to tell me that, but it is a communication I always treasure.

I write this post with a certain amount of trepidation. For those on the outside who may not be aware, the topic of vaccines is the most divisive in the autism community. It can pit parents against those on the spectrum, and against other parents. It puts the scientific and medical community against alternative providers and the people who use them. I hate this division, there are bigger things to fight than one another. So I don’t really want to write about this debate. I’ve read a lot on both sides, and both make compelling arguments. There may be different kinds of autism, not just in severity of challenges, but in varieties too. Some may be genetic, some may be toxin-caused, and some may be a mixture of both. There may yet well be an as yet undiscovered auto-immune element to autism that will vindicate both sides. I don’t know, I may never know. I just have to make the decision for our family, because we have Cubby, and last week we had his appointment for his MMR.

When we look back at how Pudding was as an infant, before she even had any vaccinations (she was born in Europe, different vaccine schedule) she was intense, required more sensory stimulation than other babies. Of course, I didn’t know that then, but it has become more developed over time. There are family traits that can’t be ignored. She never had an adverse reaction to her vaccines. Everything points to her variety of autism being inherited. Don’t get me wrong, I still went through the process of blaming myself for some unknown event during my pregnancy or her infancy, but the evidence just wasn’t there. I just think she was born with this neurological difference, I don’t think her brain was damaged by toxins. I fully appreciate, however, that this isn’t the case for everybody.

So the rational part of my brain had no qualms about taking Cubby for his MMR. I thought of the evidence. I considered the opinions of medical professionals I trust. No problem.

Except…Fear isn’t rational. It takes facts and evidence and turns them upside-down. And when I was in the room waiting for the nurse to come back in, I worried about if I’d got it wrong. I was thinking of accounts I’d read about children who were typically developing until they got the MMR, and the child they knew disappeared. I was thinking about how it would feel if this was one day revealed to be the cause. What if he developed a more severe disability than his sister? The answer is, we’d accept it. We’d live with it. I thought I’d got over blaming myself, but here I am, still thinking that something I do could affect his outcome negatively. Am I ever going to stop doing that? Spectrummy Daddy and I had discussed it, and concluded that we needed to give him the shot, but Spectrummy Daddy was at work. I resented that I had to be there, that ultimately it was down to my say-so. So it was just me, Fear, and my two beautiful but quirky kids in that room. I would do anything to save those kids from harm, and with Fear in the room, I felt they were about to be attacked.

Cubby had his vaccines, but I didn’t defeat Fear. There is something every parent is more afraid of than autism. There has already been a reemergence of measles. It can be fatal, particularly in less developed countries, like the ones we might potentially move to next year. If I made the choice not to vaccinate, and the worst happened, I couldn’t live with it. When the rational part of me was gone, and I’m left with fear on all sides, there could only be one choice. I went with the one I can live with.

Now that Fear has moved on, and I’m back to being my somewhat rational self, I find I can live very well with my decision. Fear has definitely overstayed its welcome though. It is time it found somewhere else to live.

I want to preface this post by saying that while Pudding has sound sensitivities, or auditory processing dysfunction, it appears to be less of a problem for her than for others on the spectrum. I don’t know why she is only mildly affected, and others have it much worse than she does. I only know that it can sometimes interfere with our daily life, and that makes it a problem for us. One more thing, the attached video contains noise that those with sound sensitivity will not appreciate! Please lower your volume before you play.

The object that I habitually refer to as a “hoover” may be known to you as a vacuum cleaner if you hail from anywhere other than Britain. In fact, ours is not the brand Hoover, don’t think I’m on commission here!

Two kids, one mummy and a swimming pool. Pudding has always loved the water, but has no fear of it. Cubby is brave enough in a kiddie pool where he can stand up, but terrified in the big pool. Usually he won’t allow any part of his head to touch the water, and makes a sorry sobbing sound if I so much as transfer him to my other hip.

So going to the pool without Spectrummy Daddy in tow is a bold move. This is DC in August. It has been a scorcher, and the humidity factor can be unbearable. When we do brave the playground, the mosquitoes ravish my exotic English suck-me skin, the resulting wounds last for weeks. Yuck. Stuck indoors all the time, Pudding can’t help but find trouble. At times I feel like I say nothing but “no” to her. I’m weighed down from being so negative. We’d been inside too long, it was time.

We’d had some problems before in getting her to wear her swim vest, but if she put it on back to front, she was fine. It kind of looked like I’d put my special needs child in a straight jacket, but she was happy, safe, and unable to reach the zipper to take it off. I’m getting used to odd glances coming our way. Luckily people tend to keep their small thoughts to themselves, which is just as it should be.

Cubby clung on to me the whole time, but there was no crying or screaming. At a few points, when he was splashing around and soaking his mama (which he says properly now!) quite thoroughly, he squealed with delight. Pudding just looked calm and serene, feeling all the lovely sensation of the water. The pair of them, who have stretched my heart in ways I could never have imagined, were at peace getting what they needed. I wanted to cherish the time. I didn’t feel like the mother taking care of her high-needs children. I was the special guest at this party. I felt honoured to be in attendance.

After a while, she took to climbing out and jumping back in again, over and over. There didn’t seem to be much purpose to it, but she had the most beatific smile on her face, it must just feel right to her. So often I’ve taken for granted that my senses and my body work just as they should, I’m so fortunate. I wish she could have that feeling more often. I wish everybody could. I’m just glad she gets to have her moments of it, and I get to share them with her.

One time as she took off, she looked at me and gleefully said, “I’m flying!”. My heart soars along with her. For that one sweltering afternoon, my love, we both were.

Usually, when Pudding is sleeping, I am too. Not so many photos of her like this!

You know, there just might be a Beatles song title to fit any blog post…which is a challenge I willingly set for myself.

Last week when I asked for questions, a friend wondered about what really happens at bed time. Sleep is constantly in our thoughts in this house. I’m a big fan of it. I never feel like I get enough of it, and always want more. Even when I was pregnant with Pudding I didn’t get much of it. I was kind of prepared for those early days of round-the-clock breastfeeding. At a few weeks old, she suddenly started sleeping through the night – a full twelve hours. It was fantastic. We congratulated ourselves on our little sleeper.

So when, at 5 months old, she started waking up all the time, and seemed inconsolable, we thought it was an aberration. It must have been teething. She must have been in pain. I knew nothing of sensory issues back then. I did know about routines though, so we adhered to a strict routine, one that we continue to this day: dinner, bath, story, bed. And at 7 we would have her asleep, then wait for the inevitable screams. We got fed up of this by the time she was 10 months, and we stopped going in every time she woke, and within a few nights she was back to sleeping through the night. Right around this time we discovered her allergy to dairy, but we didn’t make the connection between that and sleep. Again, we patted ourselves on the back for the return of our little sleeper.

She was never thrilled about taking naps, and at around 18 months, when I became pregnant with Cubby, she just gave them up altogether. I craved sleep, tried everything I could think of, but they were gone and haven’t returned. She was back on dairy, and because I hadn’t seen the hives and eczema this time around, we thought she was fine on it. At least she still slept through the night, though the nights got shorter and shorter.

Around this time, what we would later call autism symptoms began to emerge, but we didn’t notice them at the time. I’d tell myself she just needed more sleep, and that may still be true. She definitely functions better on more sleep, like all of us. Wearing all that energy out of her helps too, so we bought a mini-trampoline for the winter, and we go to the playground or swimming the rest of the time. Spectrummy Daddy always does some physical play with her before bedtime to wear out the last shreds of hyperactivity.

After her brother was born and we returned to the US, sleep got bad and stayed bad for several months. The first day we took her off wheat, she slept through the night again. Slowly though, we’ve gone back to night-wakening, fear of going to sleep alone, and the ever-present early-rising. Are there even more allergies we don’t yet know about? (Please, no!)

We’ve tried various night lights, no lights, a weighted blanket, a bed tent, a white noise machine, different texture sheets, changing the room temperature- everything we can think of. I have no clue if it is the allergies, sensory issues, anxiety, or just a willful preschooler determined to have her way. Sleep disturbance may just be another symptom of autism that we just have to deal with. It may be something we can never alter, just like I’m never going to be perky at 5 in the morning.

She is a smart kid. I’m hoping one day she’ll be able to tell us what she needs to sleep soundly. Or she’ll figure out that when mummy gets too Sleepy, it makes her Grumpy, and getting enough sleep makes her Happy. Maybe I’ll have a word with Bashful about it.